Victoria’s Kevin Campbell was fired up, even in his hospital bed after getting the kidney he found himself and an excruciating few days of recovery.
“I knew I had to do something extreme,” said Campbell, 50, a personal trainer and only the second person in B.C. to find a kidney donor through social media.
His online campaign helped kick-start a multimedia advocacy group for organ donation and inspired others facing long transplant wait-lists to get creative in advocating for themselves.
“I’ll be mentoring and opening cans of whoop-ass for sure,” he said via cellphone from St. Paul’s Hospital in Vancouver, where he successfully received his kidney two weeks ago.
Campbell has battled kidney disease since his early 30s. When his health started to deteriorate in 2011, he was forced to leave the family and life he made as a coach and nutritionist in Spain to return home to Vancouver Island for dialysis.
Like hundreds of other B.C. residents, he faced years on a wait-list for a kidney from a cadaver. As of June, there were 409 people on the B.C. kidney wait-list and only 51 transplants done this year.
While the introduction of living, chain and anonymous donor programs has helped cut down wait-lists, there’s still a chronic shortage of organs, said Peggy John of Transplant B.C., the agency that administers the list.
“There’s a greater interest in living donation, but raising awareness is important,” said John. While 85 per cent of British Columbians are in favour of organ donation, only 18 per cent have registered as donors themselves.
“We do expect that social media will increasingly have an impact,” she said.
Campbell decided to face his search for a donor bootcamp-style and take on promoting organ donation in the process.
He signed up for the gruelling Tough Mudder obstacle race and became the first person on dialysis to complete it, lined up a series of speaking gigs and started a blog, Facebook and Twitter campaign.
“Becoming a spokesperson wasn’t just about me anymore,” Campbell said. During his campaign, he joined forces with the Because I Can Project. The group was formed by a few concerned citizens, including Island businessman and philanthropist Levi Sampson, to campaign online for those in need of organs and to advocate for a federal opt-out donor registry to replace the provincial ones that rely on individuals to sign up.
“Social media plays a huge role in telling these important stories but also lobbying for change,” said Shelley Hunt, co-founder of Because I Can. Shawnigan Lake’s Audrey Schroeder is featured on the website, along with others in need of organ donors. “We could eliminate these wait-lists if the country was aware.”
Campbell’s online story eventually reached Darin Grunberg, a distant relative in Edmonton, who offered him a kidney and turned out to be a match. Grunberg flew to Vancouver for the operation in early November and was out of the hospital in a record two days.
“He’s like a brother from another mother,” Campbell said. “It’s not an easy thing to do for someone.”
Janni Aragon, a political science professor at the University of Victoria with expertise in social media, said Campbell’s story is a positive example of how online sharing can help people in the real world.
“This isn’t ‘click-tivism,’ but saving a life. It’s real.” she said. “The hope is that others will read about this story and then feel compelled to register as a donor or at least look at the donor registry information.”
Campbell still faces a few months of recovery, but plans to create a program to help mentor transplant patients. He suggests they find a donor they have a connection with, however distant, and make sure both patients and donors have a strong support network.
Victoria resident Shivon Robinsong, 63, said donating a kidney to her friend Joel Solomon six years ago was one of the best things she’s done.
“He’s helped so many people. I couldn’t imagine a world without him,” said Robinsong, co-director of the Gettin’ Higher Choir. She said the screening process at the transplant clinic was rigorous and respectful.
“They do a complete physical but also talked to me about my motivations and concerns,” she said. “The amount of thought they put into the emotional and ethical side of it was absolutely stellar.”
Robinsong said having supportive family and friends helped her through the surgery and recovery, as she had to take two months off work. Her health has been excellent since and her story even inspired her sister in Duncan to donate a kidney to a woman in Victoria.
“It’s a good feeling to help someone live,” she said.
“In a way, I felt it was an initiation — maybe into elderhood. I came out a different, better person.”